What if your neurologist had MS?

[Abracerebri]

Hi everyone- I'm new to this forum. Frankly, I'm new to any forum. I was diagnosed with RRMS in 5/2015. Plenty of brain lesions and a couple cervical ones just to keep me panicky about prognostication, and one bum leg. Next (3rd) tysabri infusion is next week. My situation is a bit interesting though- as I'm a neurologist- with plenty of MS patients of my own. I've been cautiously letting my MS patients know of my condition, because in my head, I think it would make me more comfortable if I knew my doctor could really relate with me. I wanted to get a sense from others here, as I certainly don't want to take away from the patient centered focus of the office visit. Also- would you be more apt to choose a neurologist if you knew he or she had MS also?

As an aside, the neurologist in me is really optimistic about the current and future state of MS treatment. Not sure the "cure" is right around the corner, but things like the discovery of CNS lymphatics make me really excited about new angles for therapy and reduction of flares.

Thanks everyone. Glad to be here.

[Seasha]

Hi Abracerebri and welcome! We're glad you're here too.

We have many medical professionals living with MS here, but to my knowledge, no one has disclosed that they are neurologists. I'm sure your knowledge and experiences will help many of us - along with the wellspring of knowledge and experience that others bring.

I had a neurologist a few years ago that I loved who, by the way, had MS! She was by far, the best one (in a long list of previous ones) that I had. Sadly, she moved away.... I felt very comfortable talking about my issues because not only did she have excellent clinical knowledge, she could relate on a personal level first hand. That was priceless!!

And you are so right in your thinking that a patient centered focus is a huge plus. So often doctors have the best intentions of helping their patient, but lack in people skills. So often they treat the disease, but not the patient. Good for you for gradually letting your patients know. They are lucky to have you!

And if I may, I encourage you to take part in sharing your experiences living with MS. Some here, knowing your are a neuro, might hound you for advice in diagnosing them, but may I remind others reading this that speaking with their own physician is best for seeking medical advice.

We also have a medical professional sub-forum you might be interested in http://www.msworld.org/forum/forumdi...-Professionals

Hope you feel at home here and again, welcome!

[JerryD]

Hello Abracerebri. Welcome to the boards. I am so very glad that you found us and identified yourself as a member of the medical profession. I always wondered where the neurologists were hiding? I mean, there are several nurses that post on this board but no neurologists. That being said, I admit to being very critical of the neurology practitioners. I think that looking for treatments, or a cure, since around 1860, is kind of ridiculous! IMO Don't you think ?
Anyway, I wonder if you are an MS 'specialist' or a general neurologist? Maybe you could give us your perspective on that topic! I am of the opinion that if a patient has the opportunity to be treated by an MS specialist, that patient should do so regularly. Good luck

[jeannef1]

Hi everyone- I'm new to this forum. Frankly, I'm new to any forum. I was diagnosed with RRMS in 5/2015. Plenty of brain lesions and a couple cervical ones just to keep me panicky about prognostication, and one bum leg. Next (3rd) tysabri infusion is next week. My situation is a bit interesting though- as I'm a neurologist- with plenty of MS patients of my own. I've been cautiously letting my MS patients know of my condition, because in my head, I think it would make me more comfortable if I knew my doctor could really relate with me. I wanted to get a sense from others here, as I certainly don't want to take away from the patient centered focus of the office visit. Also- would you be more apt to choose a neurologist if you knew he or she had MS also?

As an aside, the neurologist in me is really optimistic about the current and future state of MS treatment. Not sure the "cure" is right around the corner, but things like the discovery of CNS lymphatics make me really excited about new angles for therapy and reduction of flares.

Thanks everyone. Glad to be here.

Hi Abracerebri(great name)

Yes, I would be more likely to choose a neurologist with MS because sometimes I feel that you have to have all this weird stuff to understand what we're going through. I welcome you, but I'm sorry that you have to experience this disease first hand.

[4boysmom]

Welcome and thanks for posting about your optimism for MS's future!

I think you will be a blessing for your patients. I feel often that I know more about what I need than my neuro. They just don't get it lots of times.

Good luck with your personal MS journey.

[Perennialz]

Greetings

Hiya Abracerebri!

I'm sorry you've gotten the bum MS card too, but you'll find it easy to chat with us here.

Everybody here seems to get what we deal with, and feel, as to friends/family who truthfully do not. Sometimes their suggestions can be quite frankly frustrating at times.

[KateA2]

Hi Abracerebri! I'd be more comfortable with a neurologist with MS...there is nothing like personal experience to foster understanding. So much of the misery of MS is invisible--wouldn't have to explain as much, I'd think? Sorry you have to deal with likely stressful work plus MS...but at least you are in a fascinating field.

[Positivity]

I would totally rather go to the Neurologist that has MS after being diagnosed with MS myself. I mean I really like my Neurologist but actually experiencing what the patients are experiencing is so different that hearing about it and the regurgitating the information later from memory. You will actually be able to connect on a much more personal and human level with your patients. You will not just be some superior person with a magical pen and prescription pad, but rather a peer that will really "get" them and understand their needs, especially when/if they may have trouble explaining what they mean if you have experienced the same thing. It is a fine line though; you don't want your personal business out there-but you can relate and really understand. That is so important.

I'm really sorry to hear that you have to deal with this condition yourself though. Best of luck in all of your treatments and in your medical practice!!

[ham_sillier]

hi and welcome,

I've actually had a neurologist who has MS like Seasha. And he was by far my favorite neurologist, I found him because the national MS Society wrote an article about him and he happened to live in the city where I went to college. I happened to take his recommendations and his knowledge about the different medications or therapies a lot more seriously because I knew either he had experience with personal or not only is he had Dr who cares about learning about these medications, he might even have considered them himself. Now I'm not seeing him anymore but that's for a totally different set of circumstances, but him having MS as well really meant a lot to me; having the same disease as your patients will give them confidence in you knowing that you and your information on These medications and therapies is personal.it might be also a little harder on you in the way that the patient may ask something like why am I like this and you're like that or what would you do in my situation, and that might put a little bit more stress or pressure on you. Because I am doing quite poorly and my neurologist was doing very well and I was so frustrated and a little jealous. But in the end I believe that your MS doesn't affect your empathy towards your patients, it simply allows the patient to believe in your empathy because they know you are in the same situation as they are and trust in your suggestions or opinions.

now I'm very sorry that you have this newfound connection with your patients. Good luck with your own MS and I hope that you find that your patients appreciate that connection as they should.

[Temagami]

It can only help you be more empathetic and able to relate to the paresthesia and weird cog fog symptoms. You could have even greater street cred if you stay current with the DAILY research postings on MS- via multiple sclerosis news today or medical news today. Having to go through the DMT offerings and choices alone will make you more aware of the overwhelming task that lies before a newly dx´d person. Just as you don´t want to be known for your disease, you will be more in tune to seeing your patients as people and not just patients. May the Ty work wonders for you.

[MyGirlsMom]

Yes! That is my neurologist!!

Abracerebri,

Hi! I just had to respond and I hope this works as I am responding via my phone, which I have never done before.

Yes!!! My neurologist does have MS and that is specifically why I chose him. I am sure that he is the same neurologist referred to by the other poster. His name is William Shaffer, and based in Colorado. I met him through a NMSS presentation/event and like that he was so open about his MS. We always have good dialogs at appointments even though we don't always agree on everything. (You should be able to find a bio on him via the NMSS website.)

I switched to Dr. Shaffer because he had MS and I did so after trying two other neuros, one that was even an MS Specialist. I have to say that I love that he "just gets it", in a way that others just can't, even though they try hard to do so. I have been quite pleased and am so glad to have him as my neuro! 😊


I hope you reach out to him, as I think he would be very glad to hear from you!

[Poppy7402]

I definitely think it's a plus if you disclose to patients that you too have MS. To have someone who gets the fact that MS is so much more than something that affects one's arms and legs is priceless.

[dyin_myelin]

Honestly I don't know. I would be very cautious though, who I disclosed to. One mistake and some amoral "person" could use that as leverage in a bogus malpractice suit. That being said it would have meant a lot to me if when I was in the hospital bed if a nurse came by and said s/he had it.

I'm curious about your optimism, any treatment predicated on a novel discovery would be 10+ years through the pipeline, so is that an abstract optimism for a generation yet unborn? Are you optimistic about your own situation, and that of your patients? I always think of my neuro saying "too bad, so sad" in her head before scripting some lifetime immune stomping pill (sorry, "modulating"). I guess if I were able to ask a neurologist with MS what I would consider a million dollar question is, if your disease was very mild would you be content to take the less efficacious drugs and why? I look at the rates of progression to SPMS and wonder why the more aggressive medications aren't available to everyone. I know they come with black box warnings, but chronically suppressing your immune system must as well increase instances of cancer, etc.?

I've also been reading on other forums about treatments like HSCT. I'm not asking specifically about that, but one of the people who had HSCT commented that practitioners who offer it view MS as a hematological disorder and not a neurological disorder. I was like "yes!" and Stanford also just discovered that MSers have normal brains. I would also be interested in your thoughts on a paradigm shift in that direction.

[Jules A]

Welcome!!

My guess is it will be comforting to many of your patients although in general I'm not a fan of self-disclosure because like you mentioned it can easily shift the focus from the patient especially with regard to comparing symptoms and therapies.

For me personally I could care less either way as long as I thought the Doc was super smart, which of course most neuros are. What I can say, and it is possible I'm in the minority here, is that your optimistic attitude about the future of MS would get on my nerves. Although I'm thankful we have so many more med options now I don't see anything earth shattering coming down the pipeline. Frankly Multiple Sclerosis is a miserable thief of a disease and no amount of positive thinking will halt its progression so I'm more in favor of planning for the worst and hoping for the best than what I perceive from some as putting their head in the sand.

[gwynnf]

Welcome!

I was actually going to transfer to a neurologist who I knew had MS when my neuro retired, however, I ended up moving out of state. I want to believe that as a patient it would be easier to talk their neuro knowing they had MS. It is very frustrating to describe a feeling, pain or problem to someone who doesn't "get it". I can't tell you how many people say they understand how I feel because the are exhausted.....they have no clue!

My current neuro is also involved in MS research so I usually have a list of questions for him about treatments or trials that I have read or heard about. He says he learns from me as well as I learn from him.

I think for you as a MS patient as well as a MS doctor could only benefit both you and your patients.